PALs Losing Tastebuds?

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Katalin

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Hello, all,

Anyone else have the experience of their PAL losing their sense of taste? Today I asked my mother how she liked the new seedless jam I got her. She said she had no idea. She can't taste most of her food. She did not have bulbar onset, but she is starting to have more bulbar symptoms. I can actually hear her swallowing, and it's hard for her. She is super careful and not choking on food, but sometimes on saliva. Her food is pocketing in the outside of her lower jaw, and she uses a finger to clear it out. An old closed thread mentioned that some PALs need more salt or sugar to "taste" their food.

Any suggestions, and is this a normal progression? I know, I know, what a question, is this normal...it's so different for everyone. Thoughts appreciated.

With thanks in advance,

Kathy
 

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Strangely enough it seems to randomly go either way - losing sense of taste/smell or heightened senses. A PALS (person with ALS so it is singular :) ) often reports this at any stage once there is bulbar involvement. They may also lose ability to tolerate hot and cold liquids and foods.

So far as suggestions, I would concentrate more on getting her swallowing assessed and discussing safe swallowing, food modifications and thinking about a feeding tube while she is still in the best physical state possible.
 

Katalin

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Yes, Tillie! PALS!...singular! Yes, she's had three assessments in the past 5 months. The most recent was about a month ago. Just seems like things are getting more difficult fast. She's 87, and the family is in crisis with a very very sick sister, whose prognosis is not good, or long. I think the stress and grief is really wearing her down. I've noticed it worsening even in the last week. She's due to the ALS Clinic in February. She said no to a feeding tube, and just recently, in the last month, she said she was open to it, but wanted to talk about it in February. I contacted the clinic and asked them to put her on the waitlist, so we don't waste anymore time if that's what she wants. She's hyper vigilant on chewing, following all the steps the speech pathologist gave her.
 

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Tucking the chin a little helps with swallowing. She may already know that, but it's another tip :)

My husband was rapid progression bulbar onset, I know what it is like to just race along. It was a good idea to get her on that list - often they change their minds suddenly and it's not always simple to just make something happen fast, so having things ready and organised in advance, even without their permission can really help. If you get to Feb and she says no, then you can step back from the list. Someone will have been waiting for an opening if you create one.
 

Katalin

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Tillie thanks. It was really crossing a line for me to put her on the list against her wishes. I never want to do anything she doesn't want to do. But in this case, it's no harm, and only good, for her, or for someone else, like you say. Yes, she's chin tucking. She was good: the last speech pathologist tried to trick her into speaking while eating. Mum just gave her the stink-eye and kept on chewing. :)

I guess it's just hard to know when it's going to cross the line from concerning to nerve-wracking. I need to find out how to do Heimlich on someone sitting in a bed. I can't seem to find that here. Maybe I need to post the question.
 

KarenNWendyn

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Sometimes loss of taste results from loss of sense of smell. Occasionally this results from zinc deficiency, so adding a multivitamin daily may help, especially if her nutrition has been sketchy. Also rule out sinus blockage.

I’ve learned from this forum about “phantosmia” which is smelling things that aren’t there. I suppose it’s possible for ALS to increase or decrease smells and tastes, even though it’s hard to understand how motor neuron loss would do this.

But it’s always good to consider other causes too, especially if they are treatable, like vitamin deficiencies.
 

Katalin

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Thanks Karen, interesting note about sense of smell. I will ask her about that. She should be good for zinc, (red meat, poultry, etc.), and her diet is reasonably good. She can't swallow a multi. Can't tolerate the gummies. But we'll look into that.

Kathy
 

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I would consider it crossing a line if you were trying to make the person do something. But having their name on a list, having equipment ready in advance, things like that is being proactive and increasing their choices.

PALS don't really choke to death - the swallowing issues and 'choking' episodes are not really obstructive choking. A good thump on the back may be a right response at times, but usually the response to 'choking' is to remain calm, breathe through the nose as this helps the most. It feels like choking, but isn't really an obstruction, it is the throat pockets not clearing fully. Hope that makes sense.
 

Nikki J

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Well PALS have choked trying to swallow something they should not. My sister needed Heimlich once so did my mother.

A CALS here lost her husband to choking but he also had ftd , was mobile and choked on an apple he found
 

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Yes eating an apple is something that truly causes obstructive choking :(
 

Katalin

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Tillie and Nikki, thanks both for your info.

Tillie, I don't quite understand about the "pockets" in the throat...but that swallowing physiology is complex. I can take it on faith that there's pockets there that I don't understand..

I have read on other threads about these choking episodes with PALS and that it was more of a sensation that was helped, or resolved, by being as relaxed as they could. And being relaxed was a mammoth psychological effort for them. And that the whole thing was totally unnerving.

So sounds like there's obstructive choking, hopefully resolved by Heimlich manoeuvre. And then there's just the sensation or a different kind of choking that doesn't actually involve a physical obstruction, and resolves by relaxing---a kind of spasm? And then there's aspiration of fluids into the lungs...so many crummy things to happen.
 
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grounded

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I had a loss of most taste years before any ALS symptoms. The specialist I saw for this said this wasn't unusual when getting older.

https://www.mayoclinic.org/healthy-lifestyle/healthy-aging/expert-answers/loss-of-taste-and-smell/faq-20058455
"Some loss of taste and smell is natural with aging, especially after age 60."

https://www.webmd.com/oral-health/oral-sense-taste-change#1
"As you get older, it can get harder for you to notice flavors. Some women can start to lose their taste buds in their 40s. For men, the change can happen in their 50s."
 
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